How to promote citizens’ brain health?

Insights from the Global Brain Health Survey on citizens’ perceptions on brain health interventions

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Introduction.....................................................................................................................5

The Global Brain Health Survey...............................................................................5

Methods......................................................................................................................6

Key findings.....................................................................................................................7

What type of assistance do people need to make lifestyle changes?...................8

Group differences in the assistance needed......................................................10

What should public authorities do to promote brain health?..............................14

Group differences on public interventions..........................................................16

Which sources do people trust for information on brain health?........................17

Group differences in source trust.........................................................................18

Action steps by health authorities to improve

brain health, as recommended by survey respondents.........................................21

Learn more...............................................................................................................24

Appendix........................................................................................................................26

Content

Photos: Colourbox and Stocksy

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Introduction

Brain health is a relatively new concept which encompasses mental, cognitive, and physical brain function. In other words, brain health entails mental well-being and normal brain function in the absence of brain disease (see Wang et al. 2020 ).

In Europe, approximately one-third of the total disease burden relates to brain disorders, with vast personal, societal and economic consequences. Poor cognitive health and dementia are furthermore expected to increase in both high and low income countries in the near future.

Recent studies suggest that several life-style factors are associated with lower risk of developing brain disease . Such lifestyle factors include physical activity, a healthy diet, sufficient sleep, stress reduction and refraining from substance use, such as alcohol, smoking or illicit drugs. However, there appears to be limited public knowledge and aware-ness of how lifestyle factors can affect brain health, and possibly reduce brain health risks .

This report draws on the results from an international survey, The Global Brain Health Survey (GBHS) . The report high-lights findings from the survey about citizens’ perception of brain health and citizens’ views on what public health authorities can do to foster brain health.

More precisely, it describes i) what type of assistance people need to change their lifestyle for brain health impor-ovement or maintenance, ii) what they believe public authorities should do to promote brain health, and iii) which sources they trust for brain health infor-mation. The report is particularly relevant for policy makers, public heath authori-ties, researchers, medical professionals, patient groups, and NGOs with an interest in brain health.

The Global Brain Health Survey The GBHS is an international study about citizens’ perceptions of, and motivation for, maintaining their brain health. This report focuses solely on results related to brain health promotion. In total, 27,590 respondents within 81 countries partic-ipated in the GBHS. The survey was conducted by the Lifebrain Horizon 2020 consortium (2017-2022): “Healthy minds 0-100 years: Optimising the use of Euro-pean brain imaging cohorts (Lifebrain)” . The following organisations were co-or-ganisers or collaborating organizations of the survey: The Norwegian Brain Council, the German Brain Council, the Belgian Brain Council, the Brain Foundation Neth-erlands, the Swedish Brain Foundation, the Women’s Brain Project, Hersenonder-zoek Nederland, Join Dementia Research UK and the National University of Ostroh Academy in Ukraine.

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Methods The online survey was available in 14 languages, including French, Spanish, Dutch, Hungarian, German, Italian, and Scandinavian languages, between June 2019 - August 2020. It was disseminated through the networks of brain councils and brain research centres within Europe, in addition to mass and social media. Everyone aged 18 years and older could take part. Respondents are predominantly from Europe (over 93%), and with the majority from the UK (37%), the Netherlands (25%) or Norway (13%). The majority are women (71%), middle aged or older (66% are between 40-70 years),

and highly educated (70% attended graduate school).

While the sample is not representa-tive, the survey is to our knowledge the largest study to date about public perceptions of brain health. Survey questions relating to brain health promotion are found in the Appendix.

The data were processed in software for statistical computing, R version 4.0.3 (2020-10-10), for descriptive analysis. The free-text responses were analyzed qualitatively by summarizing responses in different languages according to recurrent response categories.

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The survey finds that to succeed with lifestyle changes to improve or maintain their brain health, respondents need professional support and regular moni-toring or follow-up to track the effect of such changes.

The survey respondents think that public health authorities should provide reliable and easy-to-understand scien-tific information about brain health, and free of charge and easily accessible brain health tests, should these become available in the future.

Most also believe that public health authorities should introduce sport and relaxation activities within schools and work places, and subsidise physical activities and healthy food. About half of the respondents support increased taxes on unhealthy food. There are some differences between age groups in which interventions they support.

Of the sources people trust for accu-rate brain health information, brain health specialists and scientific journals receive the highest levels of support. General practitioners (GPs), official

Key Findings

websites and public researchers receive moderate to high trust. Age, and to some extent education, appears to influence how much certain sources are trusted. Conventional media are met with general skepticism, and the youngest respondents trust them the least. Social media are trusted the least by all respondents.

It should be noted that the relatively high level of education among respond-ents is likely to affect the results.

The survey results indicate several relevant action steps for policy makers and public health authorities to improve brain health. Main recom-mended activities include:

• Communicate evidence-based information on brain health

• Provide professional support and follow-up on lifestyle changes for maintaining and improving brain health

• Subsidise beneficial activities and food for maintaining brain health

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What type of assistance do people need to make lifestyle changes?

87% 13%

YES NO

Advice from my GP or a specialist , e.g. nutritionist or personal trainer

Regular monitoring to review the effect of lifestyle changes

Support from family members and/or friends

A mobile app to help with brain and physical training

80% 20%

47% 53%

41% 59%

Group support, e.g., a walking group 27% 73%

Other kind of help 3% 97%

Survey respondents were asked to select which forms of assis-tance they would need to make lifestyle changes for maintaining or improving their brain health. They could also suggest additional forms of assistance, examples of which are quoted below.

Figure 1. Question: Imagine you decide to change your lifestyle to maintain or improve your brain health. What kind of assistance would you need?

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Professional support and regular monitoring

Almost nine out of ten (87%) would need professional support, either from their GP or a specialist.

Four out of five (80%) would also need regular monitoring to review the effect of their lifestyle changes.

Close to half of the respondents (47%) would need support from family and friends to change their lifestyle. A fourth (27%) would need group support, for instance from a walking group.

Two out of five (41%) believed they would benefit from an app.

“I would need to have some kind of feedback that would let me know about progress and whether anything I might do was having an effect”. - UK respondent

would need profes-sional support, either

from their GP or a specialist.

87%

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“It would be great if you could insert your data so that (the app) could generate a plan of the activities that would make the biggest impact for your brain health given your age, gender etc. It could start small, for instance walking a few minutes a day and ticking of the boxes of what you achieved to progress to the next level”. - UK respondent

Group differences in the assistance needed

Younger respondents (under 26 years) would need more support from family and friends (65%) compared to older respondents (46% over 40 years), whereas only 34 % of younger respondents (18-25 years) would need apps.

Reliable information, online support, and subsidies

The survey included a free-text option where respondents could suggest additional support they would need for implementing and maintaining lifestyle changes. In total, over 800 respondents provided such suggestions.

Younger respondents would need more support from

family and friends compared to older respondents

65%

46%

vs

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Illustration of additional forms of assistance suggested by survey respondents to facilitate brain-health related lifestyle changes. The above word cloud is generated with Nvivo 12 and based on the UK responses (N: 348 out

of 810 respondents). However, it largely reflects suggestions from other countries.

Several suggestions were recurrent across countries. Overall, these recur-rent suggestions can be categorized as follows:

Reliable and understandable information

Numerous respondents requested clear, evidence-based informa-tion that was easily accessible.

Respondents for example wrote:

“I want factual information to understand what works and why I should change my lifestyle”. - Danish respondent

“Examples of activities that address different life situations, and an explanation of why they work”. - Norwegian respondent

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Personalized plan and follow-up to improve brain health

Several respondents highlighted the usefulness of a concrete plan that considers their personal situation, and regular follow-up to track improve-ments. Specific examples by respondents were:

“A plan over activities I should do, and when, and measurable improvements that should occur within a given time-period”. - German respondent

“It would be good to have someone work out a feasible ‘health regime’ that I can stick to and that does not decrease my quality of life too much”. - UK respondent

Online resources

Quite a few respondents requested different forms of online resources, such as information, brain-training, forums, programmes, device, support, or tests.

Peer support

Several suggested they would benefit from exchanging advice and experience with others in a similar situation, either online or in physical meetings.

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Examples were:

“Seek advice from a group of others who are also affected and who seek similar change”. - German respondent

“A site where I could chat with others in the same situation, without having to meet physically, you could just read and take part in others’ experiences, ask questions and get advice, maybe even from professionals”. - Swedish respondent

“Support from my employer to have time to carry out activities”. - Spanish respondent

Practical and financial aid

Respondents suggested various forms of assistance they would need to implement lifestyle changes, such as subsidised activities or family-di-rected support. Several suggested subsidised gym memberships, others suggested financial assistance to implement lifestyle changes, whereas a few requested practical assistance with care tasks.

Motivation

Several respondents highlighted the centrality of gaining and maintaining motivation to initiate and continue with life-style changes.

“I already see signs of brain deterioration and see me going the same way as my mother. I already pay for a brain-training app but use it very infrequently (even though it was my new year’s resolution). I think I’d need ‘shock treatment’ to galvanize me to keep doing it. I can see the difference a week or two of training does but still hate giving it the time (and doing it as it’s tiring and I’m not very good at it)”. - UK respondent

“Help to make changes fun”. - Dutch respondent

“A podcast or some other media that provides motivation” - Norwegian respondent

“If any of the necessary changes cost money, there should be some sort of support, for example help with childcare, house cleaning, cooking”. - Norwegian respondent

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What should public authorities do to promote brain health?

Figure 2. Question: What should the public authorities do to promote public brain health?

Survey respondents were asked to choose between several activities they believed public health authorities should implement to improve citizens’ brain health.

95% 5%

82% 18%

76% 24%

72% 28%

68% 32%

55% 45%

YES NO/DO NOT KNOW

Inform the public about brain health

Offer brain health tests free of charge to citizens

Introduce relaxation activities and sports in schools and work places

Subsidize food and activities that are beneficial for the brain

Prevent insurance companies from accessing the results of brain health tests

Raise taxes on products unhealthy for the brain

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Provide information, subsidies, and testing

Inform the public Close to all (95%) think that public health authorities should provide infor-mation on brain health.

“Access to clear, understandable information, written for lay people”. - UK respondent

“There already exists lots of information on beneficial diet or lifestyle changes, but it is not always easy to know what works or how necessary they are. If there was an online database with evidence-based sugges-tions, advice, apps, etc., I would use it. It could for instance provide targeted information for different conditions”. - Norwegian respondent

“Inspiring advice, serious, but also light-hearted, perhaps in a TV-series or a magazine”. - Swedish respondent

Facilitate brain health testing Respondents were asked to imagine a simple brain health test, in line with existing tests used for to measure the heart, that could reveal the risk of developing a brain disease. Given the existence of such a brain health test, four out of five (82%) think that it should be offered free of charge. Seven out of ten (68%) think it would be important to prevent insurance companies from accessing the results from such tests.

Provide relaxation activities and subsidise beneficial activities and healthy food Three out of four (76%) think public health authorities should introduce relaxation activities and sports into schools and workplaces. Three out of four (72%) also think that public health authorities should subsidise healthy food and beneficial activi-ties, whereas a little over half (55%) believe taxes should be raised on unhealthy products.

“Financial aid to imple-ment change like the gym programme for heart health for low income families”. - UK respondent

4/5 think public health authorities should offer brain health test

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Group differences on government interventions

Age groups differ somewhat in which interventions they support. Preventing insurance companies from accessing brain health test results is a greater concern to older adults (60-70 years,

71%) than young respondents (18-25 years, 52%).

Young people are more in favour of introducing relaxation activities than older respondents (86% of those between 18-25 years compared to 73% of those between 61-70 years).

71%Older adults (60-70 yrs) are more concerned with preventing insurance companies from accessing brain health test results than young respondents (18-25 years, 52 %).

80%Younger adults (18-40 yrs) are in favour of subsidies, and only three out of five of older respondents (+70 yr) are positive to subsidies.

Young and middle-aged adults are furthermore most in favour of subsi-dization: four out of five (80%) of respondents between 18-40 years want them. Only around half (52%)

of respondents below 70 years want increased taxes on unhealthy products.

More men (60%) want higher taxes on unhealthy products in comparison to women (53%), and more women want relaxation activities than men (78% compared to 71%).

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Which sources do people trust for information on brain health?

Survey respondents were asked to which extent they trust sources of information on brain health. One should bear in mind that the level of trust attributed to various sources likely reflect the relatively large proportion of respondents with higher education in the survey.

MODERATELY NOT AT ALLTO A GREAT EXTENT

33%65% 2%

95% 5%

48%50% 2%

48%49% 3%

55%37% 8%

69%6% 25%

69%3% 28%

56%1% 43%

48%50%19%1% 80%

A brain health specialist

Scientific journals

My general practicioner

Official websites of public health authorities

Public researchers

Online medical forums

TV/radio (including podcasts)

Newspapers and magazines

Social media (Facebook, Twitter, Instagram)

Table 3. Question: To what extent do you trust the following sources of information

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Brain health specialists and scientific journals are trusted sources for brain health information

People trust some sources more than others. Brain health special-ists are trusted the most; close to all respondents (95%) trust them to a great extent, and 5% moderately. Most also trust scientific journals; over half (65%) to a great extent.

Half (50%) of respondents trust their GP to a great extent and about half (48%) trust them moderately.

Official websites by public health authorities are trusted to a great extent by about half (49%) of the respondents while about half (48%) trust them moderately. However, only about one third (37%) trust public researchers to a great extent, while about half (55%) trust them moderately, and one out of ten (8%) not at all.

Mass media are trusted relatively little for brain health information:

TV and radio (including podcasts) are trusted moderately by most (69%), and not at all by about a third (28%). Newspapers and magazines are trusted even less: about over half (56%) trust them moderately and less than half (43%) not at all.

The majority (80%) do not trust social media at all for brain health information.

Most trust online medical forums moderately (69%), while one fourth (25%) do not trust them at all.

Group differences in source trust

People with higher education trust scientific journals more than others: 70% trust such journals to a great extent, compared with 45% with primary school educa-tion. Young adult respondents also trust scientific journals the most: 74% of respondents between 26-40 years trust them to a great extent, compared to 59% of those between 71-80 years.

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Public health websites are trusted the most by respondents with higher education (52% to a great extent), and by young adults; over half (56%) of those between 26-40 years trust them to a great extent. In comparison, only 34% of those with primary school education, and 40% of respondents between 71-80 years, trust them to a great extent.

Public researchers are trusted the most by young adults: over half (54%) of respondents between 26-40 years trust them to a great extent, compared to 29% of respondents over 60 years.

Conventional media are trusted the least by young respondents: over half (56%) of respondents between 18-25 years do not trust newspapers or magazines at all, compared to 41% of respondents between 40-80 years.

Online medical forums are also trusted the least by young respondents; two out of five (41% between 18-25 years) do not trust them at all, compared to 22% between 40- 60 years.

80% do not trust social media for

brain health information

69% The majority of respondents

trust TV and radio only moderately.

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People with higher education trust scientific journals more than others: 70% trust such journals to a great extent, compared with 45% with lower education

70%

Over half (56%) of young and middle-aged adults trust public health websites to a great extent, compared to less than half (40%) of the elderly (over 70 years).

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Action steps by health authorities to improve brain health, as recommended by survey respondents

The survey results indicate several relevant action steps for policy makers and public health institutions to improve public brain health. The main recommended activities are:

Disseminate up-to-date and evidence-based information on how and which lifestyle

changes improve brain health. A diversification of information sources, suited to

specific audiences, can be the key to spread messages about brain health.

Communicate evidence-based information on brain health

Specialists and GPs should provide professional support and follow-up. Personal-

ised plans for lifestyle changes and regular follow-up to track improvements are

considered useful by respondents. Brain health tests are appreciated as means of

follow-up.

Provide professional support and follow-up on lifestyle changes for maintaining and improving brain health

Enable affordable access to sports and social and cultural activities. Introduce

relaxation activities in schools and workplaces. Encourage employers to offer

work-out time to employees during working hours and flexible working hours.

Subsidise brain-friendly food.

Subsidise beneficial activities and food for maintaining brain health

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Next steps

Upcoming scientific publications from the Lifebrain consor-tium will address risk and protective factors for brain health such as physical activity, body-mass index (BMI), sleep, loneliness and depression. More results from the Global Brain Health Survey will focus on citizens’ motivations for undertaking brain health tests and implementing lifestyles changes for maintaining their brain health.

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The Global Brain Health Study (GBHS) forms part of “Healthy minds 0-100 years: Optimising the use of European brain imaging cohorts (Lifebrain)”. The Lifebrain Horizon 2020 consortium (2017-2022) integrates data from 5200 European research participants collected in 11 European brain-imaging studies in 7 coun-tries. A key part of Lifebrain is to identify and integrate stakeholder perspectives. For more information about Lifebrain, please see www.lifebrain.uio.no or contact us by email: info@lifebrain.uio.no

GBHS co-organisers and collaborators: The Norwegian Brain Council The German Brain Council The Belgian Brain Council Brain Foundation Netherlands The Swedish Brain Foundation The Women’s Brain Project The National University of Ostroh Academy in Ukraine Join Dementia Research UK Hersenonderzoek Nederland

This report was authored by: Nanna Fredheim, Researcher, Norwegian Institute of Public Health, contact info: NannaAlidaGrit.Fredheim@fhi.no

Isabelle Budin-Ljøsne, Senior Advisor, Norwegian Institute of Public Health, contact info: Isabelle.Budin.Ljosne@fhi.no

Barbara Bodorkos Friedman, Research Coordinator, University of Oslo, contact info: B.B.Friedman@psykologi.uio.no

Rebecca Bruu Carver, Senior Communication Advisor, Norwegian Institute of Public Health, contact info: Rebecca.Bruu.Carver@fhi.no

Learn more

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Thanks to: We are grateful to the participants who have taken part in the Global Brain Health Survey. Thanks also to the GBHS co-organisers and collaborators contributing Lifebrain associates Athanasia M. Mowinckel, Klaus Ebmeier, Christian A. Drevon, Enikő Zsoldos and Øystein Sørensen, and graphic designer Shane Colvin.

To reference this report: “How to promote citizens’ brain health? Insights from the Global Brain Health Survey on citizen’s perceptions of brain health interventions”. 2021, Lifebrain. ISBN: 978-82-8406-223-5

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14. Imagine you decide to change your lifestyle to maintain or improve your brain health. What kind of assistance would you need? Select all those that apply. Advice from my GP or from a specialist, e.g. a nutritionist or a personal trainer Support from family members and/or friends Group support, e.g. a walking group A mobile app to help with brain and physical training Regular monitoring to review the effect of lifestyle changes Other kind of help (please specify): 15. The public health authorities should: Yes No Do not know

Inform the public about brain health

Raise taxes on products that are unhealthy for the brain

Subsidize food and activities that are beneficial for the brain

Offer brain health tests free of charge to citizens

Introduce relaxation activities and sports in schools and work places

Prevent insurance companies from accessing the results of brain health tests

16. To what extent do you trust the following sources of information on brain health? To a great

extent

Moderately Not at all

My general practitioner

A brain health specialist

Online medical forums

Official websites of public health authorities

Newspapers, magazines

Survey questions related to brain health promotion:

Appendix

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References

i Wang Y, Pan Y, Li H. What is brain health and why is it important? Bmj 2020;371:m3683. doi: 10.1136/bmj.m3683 [published Online First: 2020/10/11]

ii Livingston G et al.: Dementia prevention, intervention, and care: 2020 report of the Lancet Commission. Lancet. 2020 Aug 8;396(10248):413-446. doi: 10.1016/S0140-6736(20)30367-6. iii World Health Organ-ization. (2016). Disease burden and mortality estimates 2000–2016. Retrieved from https://www.who.int/ healthinfo/global_burden_disease/estimates/en/index1.html

iii Friedman BB, Suri S, Solé-Padullés C, Düzel S, Drevon CA, Baaré WFC, Bartrés-Faz D, Fjell AM, Johansen-Berg H, Madsen KS, Nyberg L, Penninx BWJH, Sexton C, Walhovd KB, Zsoldos E, Budin-Ljøsne I. Are People Ready for Personalized Brain Health? Perspectives of Research Participants in the Lifebrain Consortium. Gerontologist. 2020 Aug 14;60(6):1050-1059. doi: 10.1093/geront/gnz155. PMID: 31682729; PMCID: PMC7427479.

iv Budin-Ljøsne I, Friedman BB, Suri S, Solé-Padullés C, Düzel S, Drevon CA, Baaré WFC, Mowinckel AM, Zsoldos E, Madsen KS, Carver RB, Ghisletta P, Arnesen MR, Bartrés Faz D, Brandmaier AM, Fjell AM, Kvalbein A, Henson RN, Kievit RA, Nawijn L, Pochet R, Schnitzler A, Walhovd KB, Zasiekina L. The Global Brain Health Survey: Development of a Multi-Language Survey of Public Views on Brain Health. Front Public Health. 2020 Aug 14;8:387. doi: 10.3389/fpubh.2020.00387. PMID: 32923418; PMCID: PMC7456866.

v Walhovd KB, Fjell AM, Westerhausen R, Nyberg L, Ebmeier KP, Lindenberger U, Bartrés-Faz D, Baaré WFC, Siebner HR, Henson R, Drevon CA, Knudsen GP, Budin-Ljøsne I, Penninx BWJH, Ghisletta P, Rogeberg O, Tyler L, Bertram L; for Lifebrain Consortium. Healthy minds from 0-100 years: Optimising the use of Euro-pean brain imaging cohorts (“Lifebrain”). Eur Psychiatry. 2018 Jan;47:76-87. doi: 10.1016/j.eurpsy.2017.10.005. Epub 2017 Nov 8. Retracted and republished in: Eur Psychiatry. 2018 Apr;50:47-56. PMID: 29127911.10.3389/fpubh.2020.00387. PMID: 32923418; PMCID: PMC7456866.

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Social media (Facebook, Twitter, Instagram)

TV/radio (including pod-casts)

Public researchers

Scientific journals

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